Tuesday, September 24, 2019

Dust, Love and Pills

With Marian, BM CEO and Yomi, our long time friend.
She loved the BM sticker Ouchy gave out to people there.
Dear Friends and Fambly-
Very sorry to take forever to update the blog. So many things have been keeping us busy, hardly had a time to sit and think.

But first of all, wanted to say that BURNING MAN WAS AWESOME! It was definitely the right call to make the trip, and Doug never got too tired or overstimulated so it worked out quite well in every way. Deepest, never ending gratitude to Harley Dubois and Marian Goodell, two of the organizers of the event whom Doug and I have known and worked with since the late 90s. Those two ladies made  it really easy for both of us to fully participate this year.


Doug outside our RV at First Camp 
We were able to do our talk about the early days, and go to The Office for its Quinceanera, and watch The Folly burn after visiting it during the daytime.


Our talk about the formation of the Greeters and Media Mecca at The Mansonian Institute (thx, Anna!)

And yes, we marched with a whole group of friends to The Temple, took a selfie and then Doug said "I'm not dead yet" mimicking the tiny voice in the Monty Python skit- so we scooted outta there.

Most gorgeously designed Temple ever and our crew


With Harley, one of the founders, before the Larry Temple burned

Best of all, we were able to cry really hard together. We have really not been looking much around the corner, but as we were both putting on our clown makeup, it hit us that this could be the last time doing so at Burning Man. It has become a ritual for us with lots of meaning as we transformed into silly characters that helped define us for the past 20 years. We held each other, heaving with sobs, and then got our shit together to get out to the talk in clown outfits and made it just in time.
And those cries were worth all the hassle of the trip and then some.

With Bob and Anna at The Spa at Lake Lahontan, the bar Catie Magee created for Golden Guy Alley

On Friday pre-burn, our friend Amani drove Doug off the playa for a relaxing night in a penthouse suite at The Peppermill, and I had the extreme pleasure of staying another four days to frolic and provoke and cackle till way past sunrise, mostly ending up at Robot Heart frightening the high end ravers.

Yomi as SantaKlown and iKandi the Klown causing trouble at Robot Heart

Walking around the embers after The Temple fell to the ground, with Glenn Campbell as my bodyguard to keep me from melting in the extreme heat, was a very moving moment.

So, lots of therapy was had out there and tons of love received. I am so thankful we have this event in our lives; it is not as frivolous as some may believe.


Glenn, who I stumbled upon in 1998 out there and who we've befriended ever since

Doug's Condition
After returning, Doug wanted to come off steroids, and that was a mistake. It threw off his memory and mobility and caused headaches, so he is back on. He also started back on the chemo pill yesterday- and has one week on, three weeks off, and can go through that for 6-12 rounds.

He is able to do light housework, and enjoys watching TV with Clara. She is helping to get breakfast on the table for him, and doing more chores, too. And Clara LOVES her new high school and says it is the best school she has ever attended. She continues to really bloom through all this, and seems focused on her studies in a whole new way, too.

Later this week, we are taking a spontaneous trip to NYC with Catherine, Guy, Una and Berch Lake- another family who has been super close to us throughout all this bullshit. For years, we have talked about taking the kids to Manhattan to explore together, and finally we are. Our cousin Dolph Ramseur, who manages The Avett Brothers band, hooked us up with comp tickets to see Moulin Rouge which recently opened on Broadway- so we are all going to catch that show. And the next night, the four adults are going to have a perfect dining experience at Le CouCou- where Guy Lake and I had dinner a few months ago. This is the kind of place where you should NOT lick the plates, but are tempted to do it anyway. Watch for the trip report soon.

The therapists are starting to suggest that we begin to plan Doug's funeral while he is still super lucid, so we are going deep into bigger questions about his preferences for how to spend his final days and how to celebrate. It is a hard topic, and will take a while to form it all up, but we are encouraged to stare at this in the face and just do it, scary though it all is.

We are amazed at the love and support that continues to pour in, and have had almost 7 weeks of weekend visitors. We need to slow it down, focus on Clara transitioning into a new school and get a grip on additional therapies. Thanks for the patience to come visit, and we appreciate all the signs you all are sending to keep us lifted up in so many ways.